Hi aotagandco,

I was recently diagnosed with PVL even though my oral specialist thinks it might be my Lichen Planus which flares up.

In November last year I had some lesions removed from my tongue (surgery which I cannot recommend anyone volunteering for!) and a checkup earlier this month identified a new lesion.

The pathology of the first lesion stated "These features are in the spectrum seen in proliferative verrucous leukoplakia. Clinical correlation is required and regular
review is recommended. Further biopsies may be indicated."

I now have a meeting booked with the surgeon to discuss the removal and testing of the new lesion.

I guess I'm at the start of a potential devastating road but very interested in talking with others going through a similar thing.

It's been a while since you've posted. I hope you are doing well.

Kind regards,

Iwan